I have been lurking around here for some time and decided to write in!! in Jan 2006 I was diagnosed with cancer in my neck - after several surgeries looking for primary, the drs did a neck dissection - slit from ear to ear, took out lots of lymph nodes and left me learning to move my arms and neck again. In Jan of this year, I was covered in spots, every joint ached and my chest was hurting so bad I couldn't take a breath in. Dr.'s said it was from all my surgeries. When I found my throat closing and no end in the spots, my surgeon sent me to a rhumie - a few tests later and Lupus is was.
Started on placquinal and steriods. Man I felt like crap. After a while I'd get feeling better and then wake up the next morning and my eye would be swollen shut - or the next I couldn't bend my hand - it was scary to wake up. On top of that my hair was falling out in clumps, my cheeks looked like a chipmunk and I had a mustache!! Dr. then changed steriods for Imeran - much better. I've been on it a month or so now and way better.
Thanks for having the forum, no on can really understand like those of us who have been or are there - thanks to you all----
It sounds like you are a fighter!! I am sorry to hear you have been through so much; from Cancer to Lupus. Steroids cause weight gain; never sleep, and on a long term daily basis they are not good for our organs and they do cause mustaches, etc.
I am glad you are doing so much better on Imuren. It sounds like it is working for you. Do you get gammaglobin shots? I get them every 3 months; and it really helps me fight off the flu, colds, etc. I even feel better.
I think this forum is great as we can all learn from each other in different stages of Lupus.
Hi Seafoam :lol:
Welcome to our family. I am also sorry that you have had to deal with so much. I just finished my third round of isotope treatment due to cancer of the thyroid (uggh, I hate even having to say that word). So, like you, I've had to deal with cancer and lupus. I also have Fibromyalgia, Raynaud's and several other auto-immune disorders.
So, in essence, you are certainly in the right place to be with people who truly understand what you are going through. You will find that everyone here is most kind, very supportive, extremely understanding and amazingly informative!
I'm glad that you decided to join us!
Peace and Blessings